Odd symptoms: any insight?

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JJ123

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Hello all,

First, as someone who has looked over these forum threads the past few days, thank you to those who share their experiences and insight. I truly appreciate how generous you are with your time.
Here are my symptoms and timeline. Any advice as to whether or not this seems like ALS would be greatly appreciated.

I am a 23 year old male. Family history of MS, and benign tremors beginning in late 50’s. While I have a family history of MS I had a clean head/neck MRI as of March 2022, no optical issues.

August: Noticed prolonged muscle twitching in left arm saw PCP, all blood work was normal.

November: noticed thenar muscles seemed smaller unsure if atrophying, did not worry too much as function was normal, though I did feel somewhat weak. Twitches continue but in both arms.

January: I notice my forearms getting smaller particularly in my wrists. The atrophy is symetrical and noticed by doctor later in March, but at the time I associate it with my lack of exercise. I feel generally weak, but functionally fine. PCP notices very slight neuro deficit (coordination problem walking heel to toe) during routine physical exam and orders MRI of head/neck, is clean. No major concerns as of yet.

March: I go to the ER for heart palpitations (that I now believe to be be very rapid muscle Twitches in my chest given that they still occur), feeling of internal buzzing sensation, also chest pain and shortness of breath, and muscle cramps. I then go back to the ER when I experience paresthesia in both hands and legs (particularly when crossed and at night ), chest pain, facial weakness and muscle twitching particularly in arms and torso. Clean CTA scans. During this time using a fork in my left hand becomes difficult, as does holding my phone in either hand for extended periods of time. I notice a fine shaking when holding the phone. CK levels normal, all blood tests normal except for high prolactin. While flexing fingers I notice a shake (tremor? Clonus? Muscle twitch?) whenever I bend fingers toward palm (flexion). Also my pinky is curling towards my ring finger on both hands, but more pronounced on left.

April: Doctor and cardiologist rule out any heart problems, doctor orders emg, pulmonary function test, mentions concern for MS/ALS, though I am very young and neither disease lines up with my symptoms exactly. Doctor notices small muscle atrophy indents in thumb and very skinny wrist. Says atrophy could be due to carpal tunnel, but unsure. I have some ulnar neuropathy as well on both sides. During this time I develop some anxiety around these symptoms, get prescribed trazodone and lexapro at my own request from doctor and see a psychologist. Psych says I do not fit classic panic disorder (though I have had panic attacks when symptoms were severe and/or I was emotionally distressed about my symptoms? or GAD quite well, unsure if symptoms are being exacerbated by anxiety or if anxiety is main driver of symptoms. My legs also feel as if they are buckling (can’t tell if there is any atrophy and have not mentioned this to the doctor yet) and whenever I tense my foot muscles they shake. Additionally I seem to be stumbling and tripping more and more clumsy picking up small items. Muscle twitching is all over my body multiple times every day. Today I also noticed my jaw muscles shake when tensed. Some face muscles are constantly twitching as well.

I have a neuro appointment scheduled in early may with a neuromuscular specialist. I am concerned, however, that my symptoms seem to be progressing very rapidly since mid March (regardless of what this is).

Questions:

1. Could this be JALS? Is the onset for JALS significantly different than classic ALS?
2. Are most JALS cases also FALS? Or are most still sporadic?
2. Is symmetric onset common in ALS?
3. Could this be respiratory onset ALS given the shortness of breath early on?
4. Can atrophy come before perceived and/or clinical weakness?


I know the odds of it being ALS are low given my age and that this does not seem like a textbook case (to my PCP anyway). However there are some symptoms that concern me, particularly the coordination issues combined with atrophy. Any insight would be appreciated and thank you all so much in advance.

Best,
J
 

lgelb

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I see no reason to think of ALS and am surprised that a doc would mention it ahead of an EMG. Most JALS is sporadic, asymmetrical onset (like other ALS), and respiratory onset remains only ~1% of ALS cases, nor are you describing it. Atrophy does not generally precede clinical weakness, which you do not seem to have.

I expect the EMG will be reassuring as regards ALS.
 

JJ123

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Thank you very much for your reply! I sincerely appreciate it. I have two more questions just to clarify, if and when you can :

1. When I abduct my fingers they and they shake, they also fatigue quite quickly. Same for when I pinch them to my thumb. The shaking seems to radiate to my forearms. Is this a sign of muscle failure?

2. My jaw seems to quiver so that when I hold my teeth together there is a noticeable clicking sound. This also gets more noticeable after a yawn. Is this a possible ALS symptom?

Thank you again, it means a great deal to me that you took the time to share your insights. I will refrain from posting until after my EMG.
 

lgelb

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No.
No.

What you describe re easy fatigue can relate to anything from an adult-onset myopathy (that the EMG will show, if you have one) to a virus to anxiety, and everything in between. This is why staying in touch with your PCP and getting whatever followup testing is advised is so important, as are your own notes about what triggers/calms down that fatigue/quivering. Diet, hydration, sleep, stress, exercise, stretching, positioning can all play a role.
 

JJ123

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Just wanted to provide an update. Had an EMG, all normal according to Neuro. Just wanted to say thanks again, my PCP referred me to a movement specialist to investigate further. My thoughts are with you all and I am incredibly grateful!
 

wishmobbing

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Happy to hear you are cleared with this EMG. All the best for continuously working with your doctors and getting to the bottom (or better yet rid) of your symptoms!
 
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